Dementia Care in Hospital

Jim Shannon Excerpts

Wednesday 6th March 2024 Commons Chamber

[Theresa Villiers]

Those are very valid points. It is important to keep people out of hospital for as often as possible, but that is particularly the case with dementia patients, given the dislocation and insecurity that comes with moving them to a different environment. Measures to keep people healthier for longer and to deliver care via the primary care system rather than in acute hospitals are an important way to address some of the problems I am outlining.

[Jim Shannon (Strangford) (DUP)]

I commend the right hon. Lady for raising this issue. Over the past couple of years, I have dealt with a number of incidents similar to the one she refers to. Does she agree that, for those with dementia and Alzheimer’s, the emotional upheaval of being taken from a safe place where they feel comfortable can often lead to incredible distress, which can, in turn, result in aggressive behaviour? I know of one young nurse who had her arm broken in two places. It was not the patient’s fault, as he was simply beside himself and could not let go of her. Does the right hon. Lady agree that there must be enough staff in place to ensure that one young nurse should not be left screaming in pain, with no one there to help her? Does she also agree that that patient deserves compassion and understanding for their outburst?

[Theresa Villiers]

The hon. Gentleman makes an important point. One problem that emerges from some of the cases I will talk about tonight is that disruptive behaviour by patients with dementia, including shouting, can often be just an attempt to communicate. It is vital that staff understand that. Of course, I agree that it is essential that we have sufficient numbers of staff to ensure that they can give appropriate attention to patients with dementia in these circumstances.

The father of Carer 2 died a month after being admitted to Barnet Hospital. This constituent reported that food and drink was often just left in a tray, with little apparent effort made by staff to feed her father. He was left all day in a chair or in bed, with no attempt made by the staff to encourage him to walk. He was not supported while in the toilet, and when that led to distressing and undignified consequences, including the soiling of his clothes and hands, he was not washed until the following day.

Carer 3 told me that her husband’s condition deteriorated significantly during a stay in Barnet Hospital. Apparently, the nurses complained and said that he screamed all night. My constituent explained to them that that meant he wanted to get up to go to the loo but was prevented from doing so by the side bars on the bed. He was simply calling out for help. She often found food left untouched, yet no one seemed to note that her father had stopped eating. The catering staff just took the uneaten meals away. His medication was also stopped without his family being told, which led to a worsening of his symptoms and his anxiety.

Carer 4 told me about her partner, who has early onset Lewy body dementia and was admitted to Barnet Hospital in April 2022 after a fall. Apparently, until that point he was walking, climbing stairs and coping fairly well at home, albeit that he was a little wobbly on his feet. But the last time he ever walked was when he arrived at the Barnet accident and emergency department.

My constituent was initially restricted in visiting hours and had to fight to be allowed to stay in the hospital outside those times. She felt that the staff, especially some of the agency workers, did not understand her partner’s care needs. She was given the number for the specialist dementia nurse covering the hospital trust, but the phone was never picked up, no matter how often she rang. During his stay in the hospital, her partner deteriorated far more quickly than he had before. He was kept in bed constantly and lost the ability to walk—he is only 55. At one point, after undergoing an MRI scan, he was left distressed and confused in a cold hospital corridor, wearing a hospital gown damp with urine after radiographers had removed incontinence Conveen equipment. After he got out of Barnet Hospital, he said he would never, ever go back, no matter the circumstances.

Carer 5 told me about her father, who was admitted to Barnet Hospital with pneumonia in November 2021. When an ambulance was sent to pick him up, he was able to walk downstairs without assistance and climb into the back. Throughout his stay, it was extremely difficult for my constituent to get to speak to any doctor or nurse about his care.

--- Later in debate ---

[The Minister for Social Care (Helen Whately)]

I sincerely thank my right hon. Friend the Member for Chipping Barnet (Theresa Villiers) for securing this Adjournment debate, and for her powerful speech. She really brought the subject to life through the examples from her constituency of people’s experiences in hospital. They were very difficult stories to hear, and I am very sorry to hear of times when it sounds like the care for people’s loved ones has fallen short.

My right hon. Friend made some powerful points that I want to address, starting with the fact that, as she said, there are many thousands of people living with dementia, and the number is only expected to increase; indeed, there will be more than a million by 2025. Many people with dementia will also be living with other health conditions. At the moment, it is estimated that around a quarter of the beds in hospitals are being used by patients with dementia, so ensuring that people receive the right care when they are in hospital with dementia is really important, as is doing our utmost to avoid unnecessary admissions and ensuring that people are discharged from hospital on a timely basis.

It is really worth emphasising the point that my right hon. Friend made about dignity, and the fact that every single person counts, at whatever stage of their life. There are challenges to ensure that people living with dementia have that dignity, particularly when they are in hospital. I, too, pay tribute to the many unpaid carers who are looking after their loved ones with dementia. I know what a huge burden and challenge that can be. However much someone loves somebody, there is a huge demand on them when they are caring for somebody with dementia. It can be very difficult, very distressing and absolutely relentless, however much they love them. I pay tribute to all carers who are doing that.

My right hon. Friend spoke first about Lisa Rutter, who very sadly lost her mother, who was living with dementia, during the pandemic—in hospital, if I heard my right hon. Friend correctly. I thank Lisa Rutter for the work that she is doing as the founder of Dementia Club UK. It is fabulous to be supporting other people to look after loved ones with dementia, or indeed those with dementia themselves. My right hon. Friend talked about the time Lisa’s mother spent in hospital, and how, for instance, Lisa knew what her mother needed but felt that she was not listened to, and that it may have contributed to her mother’s death. My right hon. Friend also talked about the visiting restrictions during the pandemic. I will talk about those in a moment.

My right hon. Friend talked about another constituent, whose wife was in hospital. She rightly talked about the importance of mobilising somebody with dementia, and how her constituent’s wife was nearly given the wrong medication, which could have been fatal. She spoke about the importance of his intervention. She also spoke about a constituent who was a carer for their father, and the importance of mobilisation, and some of the communication challenges for somebody with dementia.

My right hon. Friend talked about one person who had been screaming all night, as described by the staff. Actually, the family member who knew them understood that they were calling for help, as they needed to go to the toilet. That brings to life how difficult it can be when somebody has dementia and is not necessarily able to articulate their needs and what they want. Those who know them well will often know what they are trying to say or communicate, but that can be difficult in hospital when they may be being looked after by staff who simply do not know them well enough to know what they mean.

My right hon. Friend talked about food being left uneaten. If somebody is not eating in hospital, clearly they are likely to lose weight and their condition may deteriorate. She also talked about medication being stopped, and she talked particularly about somebody whose partner had early onset dementia, and had been coping fairly well at home. He walked into A&E, and that was very sadly the last time he walked. That emphasises the challenge of keeping people moving and maintaining their ability to be mobile during a hospital stay. She also described the fight to visit outside visiting hours.

I very much hear my right hon. Friend’s asks on visitor access, volunteers being trained in dementia care, as well as staff training, and avoiding discharge delays, among other things. I will pick up on some of those.

First, on the challenge of caring for people with dementia when in hospital, many hospitals have worked hard to do better for patients with dementia, for example creating dementia-friendly environments by changing the colour and lay-out, ensuring that staff are trained in dementia, and having dementia leads and dementia-lead nurses, as well as having training for volunteers. Standard training in caring for people with dementia is available through NHS England for staff and volunteers.

Clearly, my right hon. Friend the Member for Chipping Barnet described examples where care fell short. I have no doubt that across the NHS, with the work already taking place, we can go further. I will raise the points that she made about secondary care with my colleague, the Minister for Health and Secondary Care, so that we can work together on ensuring that care is right in hospitals. He also has oversight of workforce, and we should focus on whether the training that I know is available is being taken up by enough staff, considering the number of people in hospital with dementia.

On visiting, my right hon. Friend spoke about a subject that is close to my heart. Having been involved in some of the decisions about social care visiting restrictions during the pandemic and knowing how hard those decisions were—weighing up the infection control concerns and ensuring people could spend time with loved ones—we have been putting in place changes to Care Quality Commission regulation to make visiting a fundamental right, a fundamental part of care and a fundamental standard of care to ensure better access for loved ones to their family members in care homes and in hospitals. I know in particular how important that is for people with dementia, among others. The CQC is consulting on the implementation of the regulatory change, which will be live shortly. I believe we have taken a significant step to address concerns expressed about visiting.

Another thing my right hon. Friend spoke about was faster discharge. I am very alert to the risk of patients deconditioning in hospital, particularly patients with dementia. That is why over the past year or so, we have worked hard with the NHS to get better at identifying patients at greater risk of deconditioning, in particular those with dementia, on their admission to hospital. We have done earlier discharge planning and have been getting care transfer hubs established all across the country, which will do the work on more complex discharges. Often someone with dementia may need more access to social care. We may need to increase the access to, availability and supply of social care, so that it is there for those who will need it when they leave hospital. We have made some real progress on that over the past year.

[Jim Shannon]

Will the Minister give way?

[Helen Whately]

I have very little time, so I am afraid I will not give way.

My right hon. Friend the Member for Chipping Barnet talked about the social care workforce, another subject close to my heart. We have a strategy for the care workforce. We are building care as a career, in particular to boost recruitment and retention among our home-grown workforce. We recently published the first ever national career structure for care workers, and we are launching a new national qualification to boost the supply of care workers.

Avoiding admission is another priority for me. Clearly, some people should be—absolutely must be—in hospital for the treatment they need, but we know that patients with dementia in particular can deteriorate in hospitals, so we are doing more work with the national health service and social care to avoid admission when it is not truly necessary by putting in place alternatives or, at the other end, supporting earlier discharge through the roll-out of the Hospital at Home initiative, or virtual wards, under which we committed to at least 10,000 hospital-at-home beds or equivalent as part of emergency care recovery plans. The NHS has over-delivered on that, so we now have more than 11,000 Hospital at Home beds, which help people who would otherwise be in hospital receiving acute care. They receive that care and are able to recuperate at home, avoiding the risk of a longer hospital stay and deconditioning.

My right hon. Friend talked about dementia research and the new treatments coming onstream. The Government have committed to doubling our investment in dementia research during this Parliament, and we are on track to do that with our dementia mission. We are also working very closely with NHS England to be ready for the breakthrough treatments lecanemab and donanemab coming onstream. I should be clear that we know very well—I have received clinical advice on this—that those treatments have quite significant side effects, so they will not be suitable for everybody and I put a note of caution there. We are waiting to hear whether they are approved by the Medicines and Healthcare products Regulatory Agency and the National Institute for Health and Care Excellence. In the event of approval, NHS England is taking steps to be ready to put in place the levels of diagnosis required to be able to support those treatments.

That goes hand in hand with the work that we are doing with NHS England to improve the diagnosis rate for dementia. We have a target dementia diagnosis rate of 66.7%. That dropped during the pandemic because dementia services and assessment had to be closed, but it has been gradually building up, and I expect NHS England to get back up to that level during the course of this year. That is really important, because having a diagnosis helps people—the individual with dementia and their carers, for example—to access the support and back-up that they should be receiving.

I am conscious of the clock ticking, so I have tried cover some of the territory that my right hon. Friend set out in her speech, which I thought was very powerful in raising these significant issues for those with dementia receiving care in hospital, their carers and loved ones. I completely agree about the importance of dignified treatment and treating those with dementia with dignity at all times. I know that that can be particularly challenging in hospital, but we have to ensure that that is the case.

We will ensure that we get all the necessary care in place outside hospital, which avoids unnecessary admissions; support people to be discharged from hospital quicker; get ready for the arrival of new dementia treatments; and raise awareness about the significant proportion of dementia cases that can be prevented or at least delayed by looking after our health. In fact, the risk factors for dementia are similar to those for heart disease and other things, and there is relatively low awareness of that. We will see more people with dementia in the years ahead, but we can do more to raise awareness of how people can maintain their health and stave it off.